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I don’t think he’s on here but if your serious about doing a decent project out of this you could contact Ror Preston, he might have some good ideas/feedback. He’s an ME patient and data scientist who is currently working on Visible (tracking illness progression and PEM through heart rate...

I really think this is important. I know this isn’t referring to ME but lingering symptoms but I still feel drawing with a personal experience is relevant. In my experience, I suffered from many symptoms after a viral infection but not fatigue. It took about 1 year and me becoming very severe...

Long Covid Teachers Join Forces to Sue Ministers - Schoolsweek https://schoolsweek.co.uk/long-covid-teachers-join-forces-to-sue-ministers/

Also if I’m not in PEM it’s pretty easy for me to recall what I did in the past 10 mins. If I’m approaching PEM, I will have a blank.

For me, getting easily irritated, stressed, or emotional means pem is starting soon.

Also this open source Deep Learning Model exists which tracks fatigue based on facial expressions. I don’t know how good it is though: https://github.com/Sreyan88/Fatigue-Detection-using-Deep-Learning

This paper may be of interest; A comprehensive review of approaches to detect fatigue using machine learning techniques https://www.sciencedirect.com/science/article/pii/S2095882X21000487

Sidenote, I only had the energy to skim through and not read your entire blog, so I’m sorry if any of the comments I made were redundant :).

@forestglip Instead of making a Machine Learning Model using your face and manually labelling it, which would take large amounts of energy and time, and only be usable for you. You could use one of the many open-source emotion detection ML models. You would have to run this model a few hundred...

Found this article when looking psychwashing: Psychwashing: When Employers Use "Well-Being" To Hide Workplace Business As Usual Corporations are racing to adopt the language of the mental health movement. But is this anything more than a veil to cover up the deeper problems within the modern...

Thanks! Ref 89 leads to an interesting looking german study on doctor patient relationships in pwME. https://pubmed.ncbi.nlm.nih.gov/38062324/ I’ll be happily reading it when I have more energy.

In the patient community, it seems somewhat common to refer to instances where PEM (or a crash) led to worsening of the condition which was permanent. I have however yet to find a reference to this in the literature, if someone knows of one, I would be grateful as it is of interest to me, thanks!

It’s like how they celebrate and glorify the winner of the hunger games, while ignoring and not doing any funeral or anything for the 23 others who died.

Is there a recommended browser to use when editing mepedia on mobile? I’ve managed a couple edits, but atleast on my safari browser on my phone it’s very clonky and the ui has some obvious bugs. Am unable to use tablet or laptop due to severity.

Wondering how they found a sample of people who fit the CCC and/or IOM, of which >40% rated their health as “good”? Also here is link to pdf if anyone wants: https://www.medrxiv.org/content/10.1101/2024.05.16.24307437v1.full.pdf

Am I allowed to post this in the r/covidlonghaulers subreddit?

I’m so baffled by the fact the BBC will prefer to run stories like this, instead of running stories about people who’ve been bedridden for four years. https://www.bbc.com/news/articles/crgygy8zmzmo 'Stairs left me breathless but I scaled mountain'

@forestglip I think Rob Würst studies both people in bedrest and pem and has stated on multiple occasions the abnormalities are different. maybe his unite to fight talk and his research might be relevant to the mepedia page you are making.

Still paywalled unfortunately

Is there a transcript available somewhere?